I am a 68 year old caregiver for my 68 yar old wife of 45 years. In 2004 she was diagnosed as have athritis. When her PCP did not seem to be concerned about her tremors and problems walking, she was referred to a Neurologist who was a jerk. In the middle of chewing on his Mc Donalds burger he said yep, youhave Parkinson;s. When we doubted hi, he sent her for a MRI. Then he said nope, you do not have Parkinson's. After another 2 years we ditched her PCP and went to another who send her to a caring Neurologiest. He diagnosed her as Parkinson's. Then in July of 2009 he changed the diagnosis to Defused Lewy Body Dementia. My wife is now seeing two very knowledgable and caring Neurologists from Georgetown Medical Center Movement Disorders group. He has started her on PT and changed some medications. Since going off Aricept and Seroquel and sarting the Exelon patch, her memory has become much better. She still beleives that we are in someone else's house. This is hard and I do not look to the future. No support groups in Northern Virginia so here I am.

The confusion about the house is a delusional disorder called "Capgras syndrome."

Robin

You might start a new post/thread in the same "Introductions" area rather than replying to a thread about how to use the Forums. More people would read your post that way!

Tue Mar 09, 2010 7:40 pm

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Mariesmac,
Welcome, I too am sorry for your need to seek out such a group as ours, I am sure you will find useful information here and people who walk to same path as you do.
Come often and try and post in areas that best fit the question or comment!
Also there is a caringspouse online support group that have several men in it if you are interested !

_________________Irene Selak

Tue Mar 09, 2010 7:51 pm

chbaird

Joined: Sun Aug 26, 2007 9:44 pmPosts: 118Location: Nashville, Tn

Re: Instructions for using the forums

Irene, I would like to add my name or age and my husbands name or age so that it posts every time I submit an entry... I find that so helpful when I read others posts.... I don't know how to do that? thanks, Cheryl (Cheryl 64 - caregiver.... Ron, husband - 59 - patient)

Sat Dec 11, 2010 7:33 am

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Re: Instructions for using the forums

Cheryl, If you click on profile at the very bottom left hand corner of your own post you can edit or add to signature, let me know if this helps you !

_________________Irene Selak

Sat Dec 11, 2010 9:51 pm

set

Joined: Wed Dec 22, 2010 12:42 pmPosts: 5

Re: Instructions for using the forums

Hi Irene,,Tried to use the site you gave but it was not available.So will tell you here , any advise as where to go post let me know.My husband was diagnosd tow years ago with depression and lost his job, then AD was diagnosed and then went to Va and the dr. there suggested he might have LBd .still looking for an answer.From reading about LD which I have never heard of he fits the bill. The weight loss the sleepless fits at night (which he never had before ), the constipation, the now started seeing people that are not there, not often, but still sometimes , he movements are getting slower and voice is getting lower.Some days he is right on and others lost.Well thats my story , If you can help me get on the right forum that would be greatSuzy

When you see the main page of the LBDA Forum, atindex.phpyou see several areas of the Forum -- Welcome (this includes Welcome and Introductions areas), LBD Information (this includes Symptoms and Diagnosis, Behavioral Issues, etc), etc.

You posted your nice introduction in the Off-Topic Posts area. I think it will get more eye balls on it if you post it to the Introductions area. Click here to enter the Introductions area:viewforum.php?f=11Then click on the "new topic" button to start a new topic about yourself. Or, you can click here to go directly to a "new topic" in the Introductions area:posting.php?mode=post&f=11

Good luck,Robin

PS. I don't think Irene was saying to go to a particular site. She was suggesting clicking on the word "Profile" at the bottom of any of your posts so you can edit your own "signature."

Wed Dec 29, 2010 7:12 pm

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Re: Instructions for using the forums

Suzy, I hope Robin's post has helped she explained it well ! We often suggest going to the best fitting area so more people will see it and offer a suggestion.

_________________Irene Selak

Wed Dec 29, 2010 9:21 pm

mjffw

Joined: Wed Nov 23, 2011 5:56 pmPosts: 2Location: Nebraska

Re: Instructions for using the forums

I already sent a note directly to someone but I too have great difficulty in using this site and I am computer literate. Now it may be my anxiety getting in the way of preventing me from negotiating around site but I think not. I hope I can figure out or someone can tell me or otherwise post in simple directions how to make a post. As it is I see more admonitions on the website thatn helpful instructions. I know I get cranky with all but I do get frustrated...but still appreciate the dedication of volunteers,. Wish I could do this myself.

Fri Nov 25, 2011 4:52 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Instructions for using the forums

Hi - welcome to the forum. You may want to introduce yourself, tell your story, in the Introductions section so people will see it. The Instructions portion is usually instructions by the LBD staff about procedures, or whatever. If you have specific questions, recommendations or whatever, look at the appropriate (or closest) topic area, click on that, and then click on "New Topic" if you have a new topic. There are literally hundreds of topics on here, so you might want to search for something that looks like it applies to your topic and post there "Post Reply" instead of starting a new topic if you desire. It's very simple. You made this post so I'm sure you can make other posts, especially since you said you are computer literate. Again, welcome and sorry for your need to be here. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

mjffw -Looks like you figured out how to post! Yes, one thing the website is missing is a user-friendly "how to" guide. You might check out the FAQ to see if there's anything useful there.Robin

Sat Nov 26, 2011 1:15 am

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Re: Instructions for using the forums

Hopefully in time the site will get a bit easier for you, if you see something you would like to reply to just hit the reply button, if you want to start a new subject in an area for a question or comment just hit start new post, I hope this helps !

_________________Irene Selak

Sun Nov 27, 2011 12:55 pm

Nelda

Joined: Sun Oct 13, 2013 8:26 pmPosts: 1

introduction of myself

Hello, I am new to this site and I hope to get some valuable feedback and well as give feedback. My father first had a mini seizure or stroke, but I'm not really sure on that. Went from doctor to doctor after noticing declining mental issues. Finally found one that correctly diagnosed him with LBD about 6 months ago and all can do now is see a psychiatrist who specializes with mental dementias. None of the medications prescribed have helped. My mother and myself (daughter) just don't know what to do anymore. We cannot go anywhere in public, have visitors, watch t.v. and then the constant hallucinations and trances.

Sun Nov 17, 2013 10:34 am

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Instructions for using the forums

Nelda, welcome! We have so much to share with you. Maybe you should start a new thread introducing yourself. It might get buried in this old thread.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sun Nov 17, 2013 11:01 am

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Instructions for using the forums

Hi Nelda - Sorry for your need to be here. If you make your postings (questions, comments, etc.) under the appropriate headings you are more likely to get more responses. I hope you do a lot of reading on here, especially those topics that are most pertinent to what's going on with your dad right now. Yes, your lives are going to change a lot with what is going on with your dad, so be sure you get support here and from family and friends to help you navigate this very challenging course. Best, Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

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